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Living with Autoimmune Encephalitis - Franz See

I think anyone with an autoimmune disease will know that it can be emotionally and physically draining. But I also think that finding and surrounding yourself with people who can empathize with what you’re going through - and be there for you no matter what – will help greatly with any roadblocks that life throws your way.”

My Mom, Cheryl and Dad during my birthday celebration in 2018

Hi! My name is Franz See. I’m 42 this year, and I was 39 when I was diagnosed with autoimmune encephalitis (AE) in 2018.

It all started when I came down with a fever which didn’t go away despite visiting GP and getting medication. After taking the medication that the GP prescribed, the fever would go down but would always come back again.

Then one evening, my partner (now fiancée) came home from work to find me sitting on the couch, chewing on a bag of cotton buds and staring blankly into space. She asked me what I was doing but I didn’t respond and just had a blank expression on my face. That’s when she panicked and rushed me to Tan Tock Seng Hospital’s A&E.

I have no recollection of any of the above, but I was told that the hospital admitted me, put me on a drip, took some blood, ran some tests and put me through an MRI. All of these resulted in my diagnosis of AE. Simply put, AE is a condition where the body’s immune system mistakenly attacks the brain. This causes inflammation of the brain, seizures (which is why I had the blank expression on my face that I mentioned above), odd behaviour, and short-term memory loss – a symptom which I still suffer from.

Whilst I was in hospital, I kept having these panic episodes where I would pull out my IV drip and try to escape because I couldn’t remember why I was in the hospital in the first place. Eventually, the nurses had to use masking tape to tape the plugs for my IV drip onto my arm so I wouldn’t pull them out. They even wrote “DO NOT PULL THIS OUT!!!” on the masking tape so I wouldn’t forget.

“Do not pull this out!!!”… to help prevent me from pulling out my IV plugs during my panic episodes

As for the treatment, I was given a heavy course of steroids to reduce the inflammation in my brain. I don’t remember feeling very much emotionally whilst I was in the hospital.

After some time, I was discharged from the hospital and went home to stay with my parents so they could look after me. Imagine a 38 years old still having to be looked after by his parents. For medication, I was on oral steroids, immunosuppressants, blood thinners (because of the blood clots I developed from lying in a hospital bed for an extended period of time), and anti-seizure/epilepsy medication (which I still take today). Initially, my father had to “dispense” my medication as I couldn’t remember the medications to take, as well as the time I needed to take the medications.

Emotionally, I think I went through a period of depression where I could sleep up to 14 hours a day – ironically so that I could “forget” the symptoms of my AE. Also, I lost a lot of strength because I was lying down so much in the hospital and sleeping so much when I was staying with my parents after I was discharged. In fact, my father used to wake me up and try to get me to go on walks with him up Telok Blangah Hill which is near where they stay.

It was also during this time that I started using a diary app on my phone which allows me to attach pictures with each entry. I also started using a medication tracking app which reminds me when I have to take my medication. In fact, my dairy, medication and calendar apps are now a crucial part of my day-to-day life. My fiancée, Cheryl, is also another “tool” I use as she’s always there to remind me of anything I forget :)

Dad and me on Telok Blangah Hill

Professionally, my short-term memory has definitely impacted my career. Before falling ill, I was a project manager in a consulting company. This involved liaising with clients, and keeping track of project timelines, as well as the work of the project team members. Because of my short-term memory issues however, these tasks are almost impossible for me. But I have been lucky as the company has tried to work with my short-term memory loss by finding me work that I can cope with.

A few of my colleagues during a catchup session when I first started going back to work

When I first started going back to the office, I worked two days a week doing research for a particular project. Then I gradually stepped up to three days a week, then four days, and finally the full five-day work week. Basically, my company gave me the time to integrate myself back into work. I’m not sure if there are many other companies out there that would have made the effort to do this.

Now, I’ve moved into a Corporate Communications role which basically involves a lot of writing – something that I’m confident in doing. On top of this, I also got a small promotion earlier this year, so that really helped to raise my confidence.

My fiancée Cheryl and I just after we got engaged in 2020

Personally, I think this whole journey with my autoimmune disease has given me a greater appreciation of the people around me – my parents, friends, and my fiancée Cheryl – all of whom did their best to understand what I was going through and were there to support me in various ways. I think you never truly know how precious these relationships are until you’ve been through a really low period in your life and realize what “friends” and “family” truly mean. I’m thankful for my parents, fiancée, friends and colleagues – all of whom supported me in various ways.

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